As the results of genetic testing can provide important information on disease risk, healthcare facilities and professionals are increasingly being asked to provide genetic information of deceased individuals. In such circumstances, the right to confidentiality of the deceased and the right of third parties to access genetic information need to be balanced, in order to provide a concrete assessment of which of the rights at stake deserves protection, and to what extent. An analysis of the relevant regulations shows that the Italian regulatory framework is not devoid of interpretive ambiguity. At the same time, however, it offers interesting starting points for reflection on the type of protection to be accorded to deceased individuals and their genetic information. By reviewing recent court decisions and real cases, the authors aim to illustrate emerging rules in the management of access to genetic information for diagnostic and/or predictive purposes, and to highlight the issues that remain to be clarified.

Genetic ties: Dangerous relationships? Processing the genetic information of the deceased in the Italian regulatory framework. General lines and case report

Ciliberti R.;Battistuzzi L.;Bonsignore A.;De Stefano F.
2014-01-01

Abstract

As the results of genetic testing can provide important information on disease risk, healthcare facilities and professionals are increasingly being asked to provide genetic information of deceased individuals. In such circumstances, the right to confidentiality of the deceased and the right of third parties to access genetic information need to be balanced, in order to provide a concrete assessment of which of the rights at stake deserves protection, and to what extent. An analysis of the relevant regulations shows that the Italian regulatory framework is not devoid of interpretive ambiguity. At the same time, however, it offers interesting starting points for reflection on the type of protection to be accorded to deceased individuals and their genetic information. By reviewing recent court decisions and real cases, the authors aim to illustrate emerging rules in the management of access to genetic information for diagnostic and/or predictive purposes, and to highlight the issues that remain to be clarified.
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11567/968974
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